Talking about advanced cancer

Many people with advanced disease are surviving for longer periods of time. Treatment can often keep the cancer under control and maintain quality of life for many months, and sometimes for years.

When this happens, the cancer may be considered a chronic (long-term) illness. If the cancer has advanced, it is important to keep talking with your children.

Just as with the initial diagnosis, children may sense that something is happening, and not telling them can add to their anxiety and distress.

Children may have similar feelings to adults after hearing the cancer has advanced. These include shock, denial, fear, sadness, anger, guilt or loneliness.

Uncertainty about what the future holds will be a challenge for both you and your children.

You may be able to reassure children that, although the cancer cannot be cured, there are treatments that can help you feel better and you may be able to stay well for a long time.

Remember that the concept of time can be different for younger children. While several years might seem a short time to you, it can seem like a long time for children.

A diagnosis of advanced cancer does not necessarily mean giving up hope.

Some people with advanced cancer can continue to enjoy many aspects of life, including spending time with their children and other people who are important to them, and doing things they enjoy.

If the disease progresses, the things that are hoped for may change. For example, a person may now focus on living comfortably for as long as possible or being able to celebrate a particular event.

You can share these hopes with children while still acknowledging the reality of the situation and allowing them to prepare for loss.

While some people with advanced cancer live for years, for others, the outcome (prognosis) is fairly clear and they will know that they may have only weeks or months to live.

If death is likely in the short term, it is best to be as open as possible while trying to make the subject of death less frightening. For example, avoid saying that death is always peaceful because this may not be the case.

If you need to talk about yourself or your partner, this can be an especially hard thing to do.

Hospital social workers and other health professionals can support you and help you find ways to have these challenging conversations with your children.

You may ask children what they know about death and what they think it means. This can help you to clear up any misconceptions.

Talking to children about death openly may help them feel more comfortable spending time with their family member who has cancer.

Acknowledging that someone is likely to die also gives your family the chance to show and say how much you care for each other, and it allows families to work on any unresolved issues.

When you talk with your children about death, offer simple and short explanations. Give brief answers to questions they ask. Wait for the next question to emerge and respond to that.

It usually doesn’t help to offer lengthy explanations if your children aren’t ready to hear them. If they ask a question you don’t know the answer to, say you’ll find out and let them know.

Terms such as “passed away”, “passed on”, “lost”, “went to sleep” or “resting” can be confusing for children. It’s best to use direct language.

This includes using the words “dying” or “death”. 

Prepare children by explaining how the illness might affect the person in the days ahead and what treatment they may have. For example, the person might be sleepy or need a lot of medicine.

Young children tend to think in concrete terms, and it helps to talk about death as a change in function. For example, “When Grandma dies, her body will stop working. She will stop breathing, and she won’t feel anything either.”

It’s easy to feel overwhelmed when you or a family member has advanced cancer. An important part of supporting children is to ensure that you have support around you too. You may find some of the following suggestions helpful.

• Ask family and friends for help. Let them know what you need – they will probably be relieved to have something to do. Use an app like KiteCrew or Gather My Crew.
• Get practical assistance and information from Cancer Council and other organisations.
• Talk with your GP and consider getting a referral to a psychologist or psychiatrist, or speak with a counsellor. Depression and anxiety are common after cancer but effective treatments are available.
• Consider using complementary therapies, such as massage, to manage stress. You could also try the relaxation and meditation exercises in Cancer Council’s podcast Finding Calm During Cancer.
• Contact Cancer Hub and ask Canteen, Camp Quality or Redkite for help. Lifeline and Kids Helpline both provide 24-hour phone counselling.

Some people find it difficult to accept that their parent will never get better. This is a normal and understandable response to such a painful and difficult situation. Try to be gentle with young people who have this reaction.

Pushing someone to accept that their parent is dying may be stressful for everyone. It’s also unlikely to lead to acceptance.

While an impending death of a parent from cancer may mean that there isn’t much time, try to stay calm and be available to listen to your children’s fears and concerns.

All families are different and sometimes family members may not be on good terms. This can affect the way they talk to each other and work through challenges, such as cancer.

In most cases, children of separated or divorced parents need to be given the chance to spend time with the parent with cancer.

If the parent is likely to die, it’s important that children are prepared for the loss, and that they have the opportunity to say goodbye.

It’s also important that a clear plan for the ongoing care of the children is agreed before the parent’s death. If you need help with difficult family relationships at this time, it may help to talk to a hospital social worker.

At some stage, children are likely to ask why such a terrible thing is happening in their family. This may be a question that you are grappling with yourself.

How you respond will depend on your culture and belief system, but there are no easy answers. The important thing is to let children know it is okay to talk about it.

A: “I don’t know. Life feels unfair sometimes and we don’t always know why sad things happen. Why do you think sad things happen?”

A: “It’s no-one’s fault. Nothing you, or anyone else, did or said made me ill. And being kind and well-behaved can’t stop someone from dying either.”

Time is a difficult concept for young children, so it may not help to give even vague time frames. For younger children, it may be helpful to talk about time in relation to upcoming events (e.g. school holidays, a birthday).

Older children may want some idea of how long a parent is likely to live. It is still important to balance hope with reality.

A: “Nobody knows for sure when anyone will die. The doctors said I will probably live for X months/years. Whatever happens, we want to make the most of that time. I hope to be well enough to go to your kindy concert.”

When death is near, you may need to give a different answer:

“I honestly don’t know, but I will probably get a little weaker each day.”

“No-one can answer that, but we hope there will still be some good days.”

“Pop is very ill now because the treatment hasn’t made him better. He’s not having any more treatment and will probably die soon.”

A: “It’s very important to me that you will always be safe and looked after. Dad will be there for you, and your aunty will help all of you.”

“You might be worried about what will happen if the treatment doesn’t work and I’m not around. I’ve already talked to Grandma and Grandpa, and they will be there for you and will look after you.”

For some children, the death of a parent from cancer will mean a big change in the child’s living arrangements.

For example, if they are living with only one parent and that parent dies, they may have to move to a different house to live with another parent, family member or guardian.

In these situations, it’s important to discuss this before the sick parent dies, and to include the other parent, family member or guardian in discussions.

A: “When someone you love is very sick, it can make you feel very scared. But Mum/Dad is well and healthy now and they will be around to look after you. Whatever happens, we’ll make sure you are safe, loved and well cared for.”

A: “You can’t catch cancer. When someone you love dies, it’s normal to think ‘Am I going to die too?’. It’s very unusual and unlikely for someone young like you to die or be so ill that the doctors can’t make you better.”

How you answer this question depends on your personal or spiritual beliefs. You may need to probe further to work out what the child means by this question.

Keep your explanations simple and straightforward, and follow the child’s lead to work out how much information to give.

A: “The body goes to a funeral home until it’s time for the funeral. Then they will put the body in a big box called a coffin, which will be carried into the funeral service. After the funeral is over, the coffin is buried in the ground in the cemetery.” (This example can be adapted if a cremation is planned.)

Questions about what happens after death may also be prompted by more spiritual concerns, such as whether there is an afterlife. How you explain the spiritual aspects will vary depending on your own culture and belief system.

You may want to explore what the child already believes before explaining your own view.

A: “People believe different things about whether a person’s soul lives on after death. What do you believe?”

Babies don’t have any knowledge of death but can sense when their routine is disrupted and when their carers are absent. Toddlers often do not understand that death is permanent.

Newborns and infants may become unsettled and clingy, while toddlers may worry persistently about the well parent and think that they or their behaviour were responsible for the cancer.

You can provide comfort to children while maintaining usual routines and boundaries as best you can. Be prepared to patiently answer the same questions many times.

Avoid explaining death as “sleeping” because this can cause distress about sleep.

By the preschool years, children are starting to understand the concept of death but struggle with the idea that death is permanent (e.g. they may repeatedly ask about death, or ask when the dead parent is coming home).

Young children don’t have an adult concept of time and understand only what’s happening now. They may:

• get angry with their parent for not giving them enough attention 
• have frightening dreams
• keep asking about death 
• feel as if it is somehow their fault. Watch your child play for clues to their feelings, and if they ask questions, try to answer in an open, honest way. Explain that the parent has died and they won’t be coming back, which makes everyone sad.

By the primary school years, children may understand death but often don’t have the emotional maturity to deal with it. Younger children may think death is reversible or that they are responsible, or blame someone else.

They are likely to be openly sad, angry and distressed, and may ask confronting questions about what happens when somebody dies. You can help young children cope by:

• encouraging them to tell you if they are feeling sad, tired, angry, or need help 
• providing plenty of physical and verbal expressions of love
• explaining that it’s okay to talk about the dead parent 
• being sensitive but straightforward
• discussing how family roles might change.

Teenagers can understand death but may not have the emotional capacity to deal with its impact. They need as much preparation as possible for a parent’s death.

Like adults, teenagers’ responses to death vary. Some may be more upset when their parent is unwell than following the death, others become distressed after the death.

They might react in a range of ways, including:

• denying or hiding their feelings to protect you
• trying to handle the loss alone or distance themselves from family
• worrying about not being able to do their normal activities, or struggle to reconnect with friends or sport after a loss
• struggling with and questioning their own mortality
• engaging in risk-taking behaviour such as skipping classes, self-harming, or experimenting with drugs and alcohol

You can help teens by encouraging them to talk about their feelings with you or friends or another trusted adult. They may also want to express their feelings in other ways such as listening to music, playing sports or writing in a journal.

Ask if they want to help plan the funeral or memorial service, and try to maintain routines and house rules around behaviour as much as possible.